Six Months Since Discharge!

I know that I have not blogged in a very long time, I could not let today go by without blogging though. Why today? Because it has been exactly six months since I have been discharged from the wound care center. I feel like today is a good day to give an update, as a way to sort of mark the day.


These six months have been a period of great transition for me. When I was first discharged I remember being terrified to tell anyone that I was healed. As the weeks went by though, I realized that eventually people would need to know, so gradually I began to open up and told a handful of people. The people that I intentionally kept it from the longest were my parents. I kept it from them as a form of protecting them in case it was going to open again in any sort of catastrophic way. Also, I was probably subconsciously protecting myself from having to see people disappointed. Once the cat was out of the bag and everyone knew, it was a relief, I physically felt lighter. Finally, I would be able to move on, or so I thought.


The switch from patient to then being the person that was helping take care of my boyfriend’s wound was actually relatively easy. Aside from loving my boyfriend and genuinely wanting his wound to heal, I was absorbed in wound care because so much information about it had been floating around in my head for so long. Of course, I went to every doctor’s appointment with him, because he wanted me there but also because of the relationships that had developed with the doctors and nurses that work at the wound care center.


Shortly after my boyfriend had been discharged I began to realize just how much this whole journey really affected me. When this journey began, back in January of 2009 I was of course bummed out that I had for only the second time in my life developed a pressure ulcer. I was upset that I had let it happen in the first place, and then of course it was really upsetting that I was going to be stuck in bed for the duration of the healing process. The wound of January 2009 only lasted a month though so looking back it was really not that big of a deal. When the wound developed in April 2009 I was beyond devastated. I really felt like I had been doing everything I could to prevent one from happening so I was caught off guard. I feel like although I may not have been entirely aware of it at that time, I began to shut down when I was told I had one again. I continued to do everything my doctor and nurses told me to in order to get the wound to heal, to a certain extent. I didn’t listen to myself when I originally got a weird uneasy feeling upon meeting the doctor at the first wound care center that I was treated at. I don’t know why I ignored the feeling, except to say that it was probably because I had never had a really bad experience with a doctor. As a result of sticking with that physician for so long I was further isolated. I could not leave my bed to really do much of anything. As such, I was forced to accept help from other people, which admittedly is something that I have never been very good at. To me, this wound meant a loss of independence. I had to rely on family members to give me the majority of my meals in bed and also to take care of cleaning my room for me; two things that I am incredibly picky about. In addition, I was completely isolated from everything outside of my room, let alone of my house.


Eventually, when I got fed up with the first doctor, I got another opinion which then lead to my going to the wound care center a couple of towns away, where I had very good experiences. After a couple of appointments with my surgeon he said to me that he didn’t even think that my wound was a pressure ulcer in the first place. The surgeon said that he thought the wound developed from a pilonidal cyst. While, I was relieved to hear that the wound may not have been directly caused by anything I did, I was more than a little annoyed that I was only hearing about this after having dealt with it for more than two years. The research that I did independently, due to my own curiosity explained that if it had been properly diagnosed at the beginning the cyst could probably have just been removed, leaving me with a small wound that would, with proper care most likely close on its own.


I never really told anyone how I was feeling, and I’m not sure why I kept it to myself. Of course my close friends knew, without me having to say much but as far as talking to anyone that could help me process some of those feelings, I never said anything. Having to rely on others instead of myself was a huge adjustment but honestly, having to rely on myself, now, post discharge is even more daunting. I am better now than I was, say two or three months ago but sometimes I still catch myself feeling hurt if someone does something that I consider making a decision for me. For example, at the beginning of the summer my boyfriend, parents, a few family friends and myself were going to attend a town wide concert. The day before the concert my boyfriend got in touch with me to tell me that unbeknownst to me my father had sent him a text message telling him to buy ponchos for us because it was going to be raining the entire time we were at the concert. I was angry that my dad had gone ahead and sent that message because I didn’t feel like it was his place. My boyfriend and I are adults after all and I didn’t feel like it was my father’s decision what he and I wore to a concert. I didn’t feel like I had to words to express how I was feeling to my father directly so I didn’t say anything. Instead my boyfriend and I got our own raingear and I did my best to just let it go.


The concert in and of itself was a huge thing for me to go to. I must admit when we first arrived I was a little bothered by the amount of people. It has to have been because I had been so isolated for so long that being in a crowd was overwhelming at first. Once I was able to calm down and relax I did have a really good time. As my boyfriend and I were leaving, I decided that instead of getting a ride with my parents I wanted to push home. The concert was less than a mile away from my house and I know that I have pushed from there to my house before and I wanted to prove to myself that I could do it. I told my boyfriend that I didn’t want us to take a ride and he said that was okay with him.


Though it took longer than I would have wanted it to take, I made it. It took a whole lot of tears and some positive self-talk and some rather colorful language but I did it. At one point my parents pulled over and asked if we were sure we didn’t want a ride and I insisted we were fine. When we got to my house I looked absolutely horrible because I was tired, and wet and I had the brilliant idea to get my face painted at the concert which due to all the tears the paint had run and smudged and looked gross. At first my parents were really worried that something had happened but I explained to them that it was something I HAD to do and that they would never really be able to understand.


Later I was talking to my boyfriend and said to him that I did it and he reacted by saying, something like “yeah no kidding, it isn’t that far”. At first I was crushed that he responded in that way, until I talked to my best friend who explained to me that what he probably meant was that he knew I could do it so although he was happy for me, in his mind it was never in question that I COULD do it. Once she said that, I understood and realized that she was probably right. I kind of took the accomplishment of pushing home from the concert as a sign that I Really was going to be okay.


For awhile, that was enough to get me to begin to adjust to my life again but I still find myself unsure about my wound really being okay, and in trusting myself to make all of my own decisions, many of which had been taken away from me while I was bed bound. Approximately a month ago I really began to feel depressed. I let it go for a little while and then I decided it was absolutely time to reach out to someone who could maybe help me process everything. I called my regular doctor and explained to her a little bit of what was going on and how exactly I wasn’t coping. She gave me a few phone numbers of therapists she usually recommends, after getting in touch with one of them, who was not going to be an option for me I was discouraged. Here I had made what I felt like was a big step and asked for help and the first therapist I called was not going to be able to help. I am now pondering the other names she gave me and will hopefully come to a decision soon. In the meantime, being that I cannot turn my brain off, I have decided to try to learn a language. I don’t really know what possessed me to pick Latin, but I find myself with a textbook and workbook so it’s actually going to happen. That was a decision I made by myself!



**This post was so emotional that I’m not even posting it on the exact six month since discharge date (7/23/13) anymore. Oh well, writing it this way was cathartic. :)

Quite an Adjustment

Visiting nurses continued to come to my home for three weeks after I had been discharged from the Wound Care Center by my surgeon. They came to monitor the wound and ensure that it continued to do well even though I was starting to get back to my life and be up in my wheelchair on a more regular basis. It was very strange to go from having the wound be looked at three times a week to suddenly having someone monitor it only once a week. I was very happy that I had finally reached that point but, I had a difficult time trusting that I really was okay. The last visiting nurse visit was really difficult because I did not feel that I was ready to be discharged. My nurse then said that if I weren't really okay (physically) that she would not discharge me. She also tried to reassure me with the fact that I had been taught what to be aware of, and that I also still had both of my nurses phone numbers and of course I could get in touch with the surgeon if I really felt that things had gotten ugly again.


The first week that I didn't have any nursing visits was the strangest thing ever. I had to try to figure out how to get out of the patient mentality. I was a wound care patient for three years one month and approximately three weeks and during that time I do not feel like I had very many of my own choices. Obviously, nothing could be done without my consent so I was able to decide some things. I guess I didn't actually HAVE to listen to all of the directions I was given but I had done everything that was expected. As such, I had not really decided anything on my own regarding what I could or couldn't do or when I could do it. These adjustments were very difficult emotionally. It seems I had trusted my doctors and nurses so much that in the process I had forgotten how to trust myself. During this time I did reach out to one of my Twitter followers and was basically told that I would adjust. That it would just take some time and in the meantime I should take care of and nurture myself. That's pretty solid advice, I just needed to figure out how to take it.


As I said, I was also having trouble getting out of the patient mindset. Once I began this blog it seems that my brain was awoken and I actually craved knowledge about what was happening physically and how things work and also about patient's experiences. I figured that I could maybe pick up even more information based on what others had learned. While I was craving this knowledge, a book called 'The Take Charge Patient" by Martine Ehrenclou, M.A. was published which I downloaded a couple of days after it was released. The book was absolutely amazing. The author chose to write the book to teach current and future patients the importance of being proactive about their medical care. She accomplished writing this book, using both her own personal experiences and through interviews she conducted with patients, their families and with healthcare professionals. I cannot get into all of the spectacular information here, purely because there was so much of it but I am going to try to give a general overview of what I have learned.




Being a take charge patient begins with trusting your gut. The book explains that it is crucial to find a doctor that you can trust on a "gut level" because if you are seeing a doctor that you do not trust you will not take their advice. This made complete sense to me in a way, because looking back I realized that I never really questioned any of the advice that I was given by the surgeon that I did completely trust. Whereas, while I did follow the previous doctor's advice I did question her suggestions, I just did not have enough confidence in myself to question her directly. When I did question her suggestions I mostly did it in a critical "I don't think so" way and it was always to someone else while I was venting my frustration. The book encourages readers to pay attention to their gut feelings when deciding whether or not to see a particular physician.


The book also explains that patients need to be proactive about what is going on with their bodies so that they can be an active member of their healthcare team. It is suggested that patients gather and keep for themselves their medical record and that they provide it to any specialists that they see so that the information is as accurate as possible. That seems like a very good suggestion although I cannot say that I have ever done it. It may have been a good idea though because I the first visit to the wound care center was of course full of me giving the history of the wound and what had been done for it up until that point. I explained the best I could but admittedly some of the details did end up getting lost in the shuffle.


The author showed through her own lengthy medical ordeal and ultimate healing that she herself had to be persistent in finding both an accurate diagnosis and a physician that she trusted. Persistence is the key that stood out to me. During the two plus years that I was being treated at the first wound care center, I never once bothered to seek out another opinion or to research anything on my own, to either prove or disprove what my doctors and nurses were telling me. Obviously it is easy to point out all of the errors and things that could have and should have been done differently once the puzzle is completed but looking back if I had sought another opinion even after the first year my ordeal may not have been as lengthy as it was.


The Take Charge Patient is all about empowerment. It tells the reader that they know their bodies best and that as such they need to "speak up, ask questions and be assertive." That you, as the patient have not just the right but the responsibility to gather information and act as a member of your medical care team. This book is one that although I wish it were available to me three years ago, I do not know that I would have gained so much from it without having gone through this journey. I believe that in order for me to have fully appreciated this book I needed to have first hand experience on both ends of the medical care spectrum. From seeing a physician that I initially had a bad feeling about through all of the annoyances that went along with blindly following her instructions. To the great experience I had with a surgeon that I instantly had a good feeling about. One that I felt listened to me and that seemed to be willing to work with me instead of dictating what would happen.


Although, I have been discharged by both the wound care center and from visiting nurse visits I am still very much in tune with my body. This may border on paranoia occasionally but after this long I don't think I can be blamed for being so incredibly diligent about making sure that the wound stays closed and that I really do all I can to prevent one from happening again in the future. This ordeal was not anything that I would wish on my worst enemy but the awesome feeling of joy that it is done and of the self confidence I have gained is something that cannot be described. While I did get a job, I am still currently looking for something else that will hopefully be a more consistent position. I feel that if I keep a positive outlook that eventually the right opportunity will present itself to me.

Whoever Said 'change is good' Failed to Mention Change is Hard

Although I was very unhappy with what I saw in the picture I apparently sounded remarkably calm on the voicemail that I left my nurse. I told her that the wound was open again but to me it seemed like the open part was very small and as such I was just calling to give her a heads up about what she would see a few days later. It wasn't until the next day that she returned my call and explained that when she listened to my message she decided not to call me right then because, I did not sound overly upset. I then reiterated that what I saw was very small but that I was not upset about it that in reality I had just gotten really sad about what I was referring to as yet another setback. 

The nurse then told me that she was still going to come to my home two days  later to assess the situation, but that based on what I was telling her she was not concerned at all.  Waiting those two days felt very strange, especially considering that in the past I had always erred on the side of caution and kept my surgeon updated whenever things seemed to be going in the wrong direction. Knowing what I knew about how quickly it had closed previously, I decided to try to keep calm about it until my nurse could really tell me what was going on and what she thought we should do about it.  

When my nurse arrived she was still very positive that things were going well so she came in with a really positive attitude and sat and talked to me for a bit before even looking at the wound. When she finally looked at it she said that yes it was in fact open but that it was nothing to be worried about at all and that she was so certain it was fine that we did not need to get in touch with the surgeon. The nurse also decided that being that it was such a tiny portion that had opened and it did not have any drainage it also did not need to be covered and that my next visit would not be moved forward so it would be another week until a nurse would return.  In the meantime I was told that I could be up more often and that I could still shower whenever I wanted to. 

All of these things I was being told sounded good, yet odd.  On one hand I was upset that it had opened again, yet I was encouraged by the fact that my nurse was not worried enough to even cover it.  The situation felt odd because, I hadn't seen my surgeon that week and was not used to not needing to see him, especially when the wound had suddenly changed how it was doing. 

Being that my nurse told me that I could be up even though it was not doing as well as I had hoped it would, I had decided that my life had been stagnant for too long and it needed to move forward.  At that point I determined that I needed to start looking for a job regardless of how my wound was going. Hopefully, it would just continue to keep healing stronger each time that it closed while I began my job search. 

Stop the Ride I Wanna Get Off

Two days later, my visiting nurse and I met at the wound care center so that she could finally meet the surgeon she had heard so many good things about. When we first got there I could tell that the nurse from the wound care center was a little worried that my nurse was with me. I can only assume that that is because a visiting nurse would typically only show up with a patient when things are not going well.  My visiting nurse then explained that at her last visit that she had said it was closed. 

 After that, I personally do not remember anything else that happened at the appointment.  My visiting nurse, however, filled me in on the rest of the visit when I spoke to her on the phone the next day. She said that she met the surgeon and that he poked at the wound several times in order to make sure it was closed. After which she told the surgeon that she wanted to actually hear him say the words "it's done." He apparently said it, although I have absolutely no recollection of those words or anything similar being said.  

Usually, I remember even the smallest details about what goes on at my appointments, so I think it's weird that I do not know anything that happened.  My guess is that I do not remember because I already knew it was good news even before the day of the appointment, so I sort of went into the appointment in a fog. 

I know I left the appointment very happy but was still sort of in shock that it was really over.  When I left my appointment I called my parents to tell them. Me being the way I am, I phrased it to my father as, "does the word discharge mean anything to you?"

My dad, being just as snarky and smart-assed as I am replied back with, "well  if it's discharge coming from your wound eww gross,  but if you mean discharged from the doctor then yay that's awesome!"

I laughed and told him the good news and left it at that. When I got home I must have still been shocked because it wasn't until about four hours later that I actually looked at my boyfriend and said, "so wait a sec, am I actually done? Like finished, as in no more wound."

He said, "yep, you're done. All better!"

I was excited to hear that but it still hadn't had time to sink in yet. It was about six hours after my appointment that I finally came to the realization that this journey had finally reached a conclusion. When I realized it was over, my reaction, can only be described as the 'ugly cry.' You know, the one where you have snot all over your face and you are crying so hard there is no sound? Yeah, that one.  I believe this extreme reaction was due to the fact that two weeks before, the wound being closed was completely unexpected but this time I knew that the wound was closed based on what my visiting nurse had told me. 

Based on the visiting nurse company's policy, I knew I would still have a few more nursing visits at my home just to make sure that everything continued to go well. It was a few days before my nurse was due to come that I started to get that weird feeling in my gut again. I wanted to believe that I was just being paranoid but I still asked my boyfriend to take a picture of it to show me. Moments after seeing the photograph, I was leaving my visiting nurse a voicemail. 

My Life, the Roller Coaster

I spent the next couple of days stressed out about my wound that had opened and stayed off of it as much as possible. When my nurse came back a couple of days later she said that it was doing very well and seemed to be closing on its own. While I was very happy to be hearing this news I tried to temper my excitement, because of the major let down of a few days before. 

During the next couple of days I put myself on strict bed rest hoping that staying off of the wound would help. Two days later when my nurse came back to check on the wound's status she said, 'I am going to call that healed'. She also told me that I could start getting out of bed more often and could even shower over the weekend if I wanted to. 

Although she did decide to cover the wound for the weekend it did not really need it. It was a couple of days later that I called my nurse to make sure she really thought that getting it wet was okay. She told me that I could shower, but that she wanted me to take the dressing off before I did. She also wanted me to check the dressing for drainage so I could tell her about it the next day. Admittedly, I was nervous about taking the dressing off and especially about checking for drainage. I didn't think that I would see any drainage but I was still hesitant to look. I knew that my nurse would need to know the information so I took a deep breath and looked at the dressing. I didn't see any drainage whatsoever!  I proceeded to take my shower and then decided to stay up in my wheelchair for a little while.  

The next morning when my nurse came back, I was a little nervous about what she would see. I explained to her I was nervous but that I hadn't seen drainage the day before so I was pretty sure that everything was still going well. When she looked at it she said that it was still closed and it was fine. My nurse was at that point more excited than I was. Although I was happy that it had survived the weekend I knew that it was still sensitive and so I was trying to temper my excitement. My nurse then asked me if she could come to my next appointment at the wound care center, so that she could meet the surgeon that seemed to have so much common sense. I had no problem with them meeting, so we arranged to meet at my appointment two days later.